People Look at Me and Say ‘HIV’

Bob is a long-term survivor of HIV who was diagnosed in 1990. He has also twice battled cancer and won. But some of Bob’s most challenging moments have come from his struggle with lipodystrophy.

Bob began experiencing lipodystrophy in the 1990s, when “fat just started redistributing itself in my body. It became profoundly noticeable in my neck and in my chest.” He also lost most of the fat in his arms, legs and buttocks. “I was completely disproportionate,” he says. He suffered back pain and an irregular gait as a result.

Around 2004, while Bob was recovering from cancer, a huge volume of fat accumulated around his neck, including bulbous protrusions behind each ear. “Walking down the street I would catch people pointing,” says the 51-year-old, who lives outside Boston. “It affected me in a very bad way. … Thoughts of wanting to become a shut-in became quite prevalent.”

Bob, who asked that his last name be withheld because he fears stigma, began avoiding public events. “It has to do with the feeling that I’m being judged,” he says. “I just feel like I walk in a room and people look at me and say, ‘HIV.’ And that honestly has changed my life, in a very negative way. I just don’t feel like I live a full life anymore because of it.”

Bob received a referral from his primary physician for a reputable plastic surgeon to perform liposuction, but his insurer, Blue Cross Blue Shield, immediately denied the surgeon’s request, viewing the treatment as merely cosmetic. Bob appealed. Two of his doctors, his physical therapist, his acupuncturist, and his chiropractor attested to his medical need for the treatment. “My primary doctor said, you can take care of the problem now or ignore it but in three to four years from now he’s going to need major back surgery and it’s going to cost you a lot more,” says Bob.

Blue Cross again refused to cover any medical treatment related to Bob’s lipodystrophy.

Bob finally called Blue Cross Blue Shield himself. “I was very emotional at that point,” he says. “I said, how can you deny this when all of these facts are in front of you?” Four days later, he received a letter of approval for the liposuction surgery.

After all that, the surgeon was unfortunately unable to perform the procedure because the fat around Bob’s neck was too thick to be liposuctioned – a consequence of the long delay in his treatment.